No diagnosis chronic pain

Posted by liv1020 @liv1020, Thu, May 7 7:43pm

Hi everyone I'm new here. I would love some advice/comments on what I've been dealing with for around four months. It's a long story thankyou if you read and respond.
Around the end of January I started getting intense burning pain on the top of my legs and middle of abdomen. No rash or Marks on the skin just intense pain. I tried ibuforen, lidocaine gel, advil tylenol nothing helped. Started with primary care doctor she said to use lidocaine gel and ordered blood test. Blood test results all fine except for slightly low vitamin d deficiency. She said to start vitamin d pill I have been for months levels gone up and no relief in pain. Then went to pain clinic they did cortisone injections directly to abdomen. The injections gave me a horrible reaction that I ended up in the er for. Started on predisone and benadryl for 10 days. Once allergic reaction was gone same exact pain. They started me on lyrica made pain worse. I went to a dermatologist who said that it had to be nerve pain bc theres no rash on the skin she said to go to a neurologist. I went to him he did blood test ct scan and everything normal. I'm at a loss 🙁 I've been on lyrica, gabapentin, tropokendi, cbd cream from neurologist, acupuncture/herbs, chiropractor and laser treatment, muscle relaxer and tramadol. I'm not on any medications right now everything seems to make it worse. And creams I put on my skin break it out horribly. I'm at a loss and so miserable. This is such a mystery and no doctors can help me. I want my life back 🙁 !!!

I am not a medical professional and I don’t know if you have pain in other places, but the Pain Center at Mayo may be an option. I was diagnosed with Fibromyalgia, much to my surprise there a few years ago. To say the least, I wasn’t a convinced patient until taking their 11/2 day class which helped me understand the chronic condition much better. There is also a three week class that I may take someday (I qualified last year, but couldn’t go because I broke my foot) and now there is Covid 19…..just an idea to perhaps pursue.

Liked by rwinney

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I wish I could help, but I'm going to follow. I've 6 months with pain from patellofemural syndrome (wonky kneecaps), but also from a hard fall on concrete that has left my left side totally traumatized. After 5 months of pt, I'm going to a chiropractor. I'll let you know if anything miraculous happens. Best to you.

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@liv1020 Welcome to Mayo Connect. We're glad you have posted here! It has to be frustrating, let alone painful, to be experiencing what your body is going through right now.

Just throwing a list of ideas that came to mind:
Has there been any change in your environment? New type of clothing/bedding/place you live? A new pet? Change in diet? Perhaps a new allergy/sensitivity to something? A visit to an environmental medicine doctor might give you some answers. Does massage in the affected areas help or worsen the pain and symptoms? What about soaking in a baking soda or oatmeal bath? Have you tried topical solutions, like anti-inflammatory ointments? Are you close to a Mayo Clinic campus to ask for an appointment?

An idea is to journal your symptoms. Time of day they occur, level of discomfort, detailing out what you feel. Write out like you did here, what has been tried, and your body's response. This will help in pinpointing the possible causes.

I hope you will come back and let us know any further developments. Can you do that?
Ginger

Liked by lioness

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@cldmeyers

I wish I could help, but I'm going to follow. I've 6 months with pain from patellofemural syndrome (wonky kneecaps), but also from a hard fall on concrete that has left my left side totally traumatized. After 5 months of pt, I'm going to a chiropractor. I'll let you know if anything miraculous happens. Best to you.

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I hope the chiropractor helps you! So hard to be in constant pain with no relief 🙁

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@migizii

I am not a medical professional and I don’t know if you have pain in other places, but the Pain Center at Mayo may be an option. I was diagnosed with Fibromyalgia, much to my surprise there a few years ago. To say the least, I wasn’t a convinced patient until taking their 11/2 day class which helped me understand the chronic condition much better. There is also a three week class that I may take someday (I qualified last year, but couldn’t go because I broke my foot) and now there is Covid 19…..just an idea to perhaps pursue.

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How did they diagnose you with fibro if you dont mind me asking? I've had blood tests and a ct scan with contrast. Insurance wont approve an mri 🙁 I wish I lived near mayo I've been to 2 pain clinics near me they just want to start me on a low dose antidepressant to see if that helps.

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@migizii

I am not a medical professional and I don’t know if you have pain in other places, but the Pain Center at Mayo may be an option. I was diagnosed with Fibromyalgia, much to my surprise there a few years ago. To say the least, I wasn’t a convinced patient until taking their 11/2 day class which helped me understand the chronic condition much better. There is also a three week class that I may take someday (I qualified last year, but couldn’t go because I broke my foot) and now there is Covid 19…..just an idea to perhaps pursue.

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How did you get diagnosed with fibro if you dont mind me asking? All my tests have come back fine which is fustrating. I wish I was close to a mayo clinic that class sounds very helpful. I'm in the midwest

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@liv1020

How did you get diagnosed with fibro if you dont mind me asking? All my tests have come back fine which is fustrating. I wish I was close to a mayo clinic that class sounds very helpful. I'm in the midwest

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Sorry posted that to you twice!

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@gingerw

@liv1020 Welcome to Mayo Connect. We're glad you have posted here! It has to be frustrating, let alone painful, to be experiencing what your body is going through right now.

Just throwing a list of ideas that came to mind:
Has there been any change in your environment? New type of clothing/bedding/place you live? A new pet? Change in diet? Perhaps a new allergy/sensitivity to something? A visit to an environmental medicine doctor might give you some answers. Does massage in the affected areas help or worsen the pain and symptoms? What about soaking in a baking soda or oatmeal bath? Have you tried topical solutions, like anti-inflammatory ointments? Are you close to a Mayo Clinic campus to ask for an appointment?

An idea is to journal your symptoms. Time of day they occur, level of discomfort, detailing out what you feel. Write out like you did here, what has been tried, and your body's response. This will help in pinpointing the possible causes.

I hope you will come back and let us know any further developments. Can you do that?
Ginger

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I appreciate your reply thank you! I've been going crazy trying to figure this out. I havent changed soaps detergents lotions anything. The only thing was I started on gabapentin 300mg for painful bladder syndrome I was on it for 4 days and it was making things worse. I called the doctor they said to stop it. About a week later I started noticing this pain I made an apt they said that if I was on it for 4 days this couldnt be from the medicine. It's been 4 months now and that medicine is the only thing I can trace it back to. Its suppose to help nerve pain not cause it is what all the doctors keep telling me. I'm at a loss..

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@liv1020

How did you get diagnosed with fibro if you dont mind me asking? All my tests have come back fine which is fustrating. I wish I was close to a mayo clinic that class sounds very helpful. I'm in the midwest

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@migizii Jumping in here . I see you asked about Fibromyalgia . I have had it since the 90,s The way the Dr. found out is there are 18 trigger points on your body . I had 11 of 18 . Did your Dr check these out . Back then there was no other way except the trigger point and he asked certain questions.

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Yes that is the way my fibro was diagnosed. I had 15 of the 18 pressure points. I have suffered from this disease for over 30 years. I have tried everything known to humankind. Absolutely nothing has worked. It is a struggle each day to stay positive when every part of my body is hurting.

Liked by migizii

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Have you looked into Mast cell activation syndrome (disease)? After 2 years of no-diagnoses for my grandson's everyday nausea and abdominal pain, (he had every medical procedure in the book) our research found MCAS. We have hundreds of mast cells in our body, which are there to help control reactions to different things. Sometimes, they run amok and cause problems rather than fixing them. We watched a video done by Ilana Jacqueline who suggested a MRT blood test for food sensitivity. My grandson went through food allergy testing, but nothing showed up. This MRT test (pricey) determined he was very sensitive to turkey…of all things! He had turkey/cheese sandwiches every day during his first 2 years of high school! There were several other things (food as well as chemicals) that were causing triggers in his body. Having had type 1 diabetes since he was 10 months old, his parents thoughtfully gave him mostly zero carb foods and beverages. Artificial sweeteners like aspartame are in almost everything he has been consuming all those years. Read about aspartame….it turns into formaldehyde once it warms up in your stomach. How gross is that? Anyway, since he has stopped drinking diet sodas, his daily nausea and pain have stopped. We also watch the other things that he is sensitive to, such as corn. Corn is in many products, so it's pretty difficult. He is also sensitive to polysor80, which is an emulsifier used to make things creamy, such as ice cream, salad dressings, etc. There are a bunch of others that we are trying to eliminate from his diet, but I have to say, that we believe the aspartame has been the culprit. Just a suggestion. Hope you can get some relief. We understand your frustration. We had to do our own research to get the doctors to authorize blood tests and procedures, just to rule out so many other possible diseases.

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@liv1020

I hope the chiropractor helps you! So hard to be in constant pain with no relief 🙁

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Thank you. I've done a lot of the things you've suggested. Worked with my gp and physical therapists. With my doctor's blessing, I'm going to a chiropractor next week. Looking forward to it. This was all brought on by a severe fall on concrete.

Liked by lioness, liv1020

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@cldmeyers

Thank you. I've done a lot of the things you've suggested. Worked with my gp and physical therapists. With my doctor's blessing, I'm going to a chiropractor next week. Looking forward to it. This was all brought on by a severe fall on concrete.

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@cldmeyers Did you have an MRI after such a bad fall?

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@bookahol

Yes that is the way my fibro was diagnosed. I had 15 of the 18 pressure points. I have suffered from this disease for over 30 years. I have tried everything known to humankind. Absolutely nothing has worked. It is a struggle each day to stay positive when every part of my body is hurting.

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@bookahol You had more then I did . It is a struggle but I found away to limit my pain. Here is what I do first of all the meds for this dont help me . Some I had side effects from them worse then the fibro . I found that more magnesium is a God send it really helps me There are different types so the one I use is Magnesium Malate , also MSM, my magnesium even thought I take 450mg a day and my labs are within normal range . I think for those who dont have fibro it lower but cant remember what it is . Exercise everyday not strenuous is most helpful also I do meditation to check your body from head to toe and breathing to relax that part by visualizing I cant eat nightshade vegies . This sets it off. I wish you the best and these are only things that help me , forgot Epsom Salts bath at night before bed . Let me know if this is something that will help you be well

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@lioness

@migizii Jumping in here . I see you asked about Fibromyalgia . I have had it since the 90,s The way the Dr. found out is there are 18 trigger points on your body . I had 11 of 18 . Did your Dr check these out . Back then there was no other way except the trigger point and he asked certain questions.

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That's interesting I've never had that test done before. I will ask the neurologist. When I first went he did blood work to check for nerve damage but come to find out it was standard bloodwork/vitamin levels

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